I have been dagnosed with dysautonomia and it's getting worse,none of the standard drug therapies worked,help!

Question

I was diagnosed with Postural Orthostatic Tachycardia Syndrome also. My main concern right now is my heart. It is getting weaker, but none of the conventional tests like ekg or echocardiogram show anything. I have been sick or dysfunctional if you will for 13 months and for the first 5 months of my illness it was not that bad. Then it got way worse and has continued getting worse. I have lost 45lbs and now weigh 125lbs. My whole body is falling apart and they did all these tests, diagnosed me with dysautonomia and sent me on my way with florinef and beta blockers. The drugs made me sicker, so I stopped taking them. Additionally, before I was tested and diagnosed with dysautonomia I was misdiagnosed with anxiety disorder by a doctor who could not figure out what was wrong with me (therefore it was all in my head) So he gave me klonopin and now i'm hopelessly addicted to the stuff. So, they say I have dysautonomia really bad, but they say that they can't find any heart problem.

But trust me, I know my own body and my heart IS getting weaker. How do you develop heart failure from having dysautonomia?

Answer 1

What is Postural Tachycardia Syndrome?
Postural tachycardia syndrome (POTS) is a disorder characterized by a pulse rate that is too fast when the patient stands. Symptoms include rapid heartbeat, lightheadedness with prolonged standing, headache, chronic fatigue, chest pain, and other nonspecific complaints. Causes of POTS usually are not identified in individual patients. Reversible causes such as low blood volume should be ruled out.

Is there any treatment?
Treatment of POTS depends upon the severity of the symptoms. Individuals with the disorder are usually advised to increase their fluid and salt intake. Body stockings may provide some relief. Drug therapy, with fludrocortisone, beta-blockers, midodrine, or clonidine, can be beneficial. Physical exercise, especially calf muscle resistance training, also may help. Some patients may require and benefit from insertion of a cardiac pacemaker.

What is the prognosis?
The prognosis for individuals with POTS varies. Many patients improve with treatment, although severe POTS can be disabling for years. The disorder is not thought to progress to a cardiac disease.

Although research work is in progress but satisfactory treatment is not established.